How long does PMR last?
I am brand new here....65 year old very active and fit woman.
For years I have run 3 miles a day 4 days each week. Suddenly, in June, I woke up feeling like I ran a marathon the day before, the pain and stiffness in my legs was profound. A few weeks later, the arm pain joined the party. I literally could not push the covers off me in the morning. The stiffness became so bad and painful that I would yell out in pain while trying to get out of pain. I would need help getting on and off the toilet first thing in the morning.
My CRP was extremely high and rising with each subsequent blood test. My doctor (who is incredibly thorough) put me on 20 mgs of predison for a week--it was a miracle! I felt great during that week and about 5 days afterward, the symptoms returned with a vengence. So now she put me on a high dose (60mgs with a 3 day taper dropping the dose 10mg each time for a total of 18 days). I am 5 days in and the pain is gone but the fatigue/fever are still an issue. She is hoping to "break the cycle".
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Is the doctor only giving you short courses of pred, with a quick taper (including the 18 day one) to zero pred each time. If you do have PMR then it's puzzling that she didn't keep you on the 20 mg, then titrate down from that until you reached your lowest effective dose. That would have been the dose of pred you needed to control the current rate of inflammation that your PMR is causing.
From what you said, the 20 mg appears to have been effective and stopping it allowed the PMR inflammation to build up again. Going to 60 mg was likely unnecessary, but tapering to zero quickly again also won't work for PMR. You may need to be on a dose of pred around 12-20 mg for some time until the disease abates, with regular tapers to a lower dose as the condition improves over time. The rheumatologist will likely sort this out, but it's a long time to wait with this painful condition before commencing an appropriate and dose of pred with a regular tapering schedule.
Unfortunately, some of the recent research shows that the median time for people to have PMR is 5 years. Only 50% of people have it for less than 5 years. Among those there is a substantial group that have it less than 2 years, but it is rare that anybody has it only short term e.g six m otnhs or less. You may be lucky and have it only have it 6 months or so, but rheumatologists often suggest that you should expect 2 years optimistically.
Good luck with getting it sorted. Many doctors it seems, irrespective of country, don't know as much about PMR as we'd all like them to.
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3 Reactions@joannepatten Like everyone here says: welcome and sorry you are joining. It does seem completely different for everyone. Keep a daily diary!! I live in the US (and could not afford insurance this last year) paid into Medicare 49 years and turning 65 next month. Pain started Dec 2025, self diagnosed January 2026 and completed a bunch of bloodwork seemingly confirming PMR. I, too, refused prednisone and drastically changed diet. No processed foods, almost vegan and zero sugar, except what comes naturally in fresh fruit, etc. I water fasted 6 days in January and 31 days late January to early March. For me, I think this gave the body a fighting chance. Pain was as it is for all here, could not dress without help and getting out of bed took 45 minutes of strategyzing and planning. March I used wheelchair to get through airport and on 20th (on a ski trip in Canada with grandkids we could not cancel) I saw doc, got Prednisone. She was quite aggressive, 30MG to start and tapering 5MG each week. Pain was gone completely in an hour after 1st dose, incredible. Admittedly I was rather weak from fasting, but hey, I thought, PMR was gonna make me lose muscle anyway. Prednisone March 20-Sept 9, and down to 2.5MG from June 5 forward. My Dutch doc in June said: trust your sediment test and taper 2.5MG, to 6 days, then 5 days a week and so on. Since stopping Prednisone my PMR pain is there, but level 1-3 not 9-10 and, though not fun, very manageable. Thrilled to be off prednisone and happy it was only 5 months. I am no doc and don’t know if the cleansing fast helped. But at least I did not gain weight and my BP/cholesterol dropped to normal and has stayed there. There is hope that PMR will burn itself out. Good luck to everyone here, this is a nasty, life changing ride.
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